DPC’s State Advocacy Efforts Flourish with Elevated Voice of DPC Patient Ambassadors

2022-05-09T16:58:33-04:00April 25th, 2022|Categories: Costs for Treatment, Kidney Transplant, The Kidney Citizen, Uncategorized|

Image: Medigap champion Kentucky State Rep. Tom Burch and Elizabeth Lively, DPC Eastern Region Advocacy Director By Kelly Goss, J.D., LL.M., Western Region Advocacy Director and Elizabeth Lively, Eastern Region Advocacy Director, Dialysis Patient Citizens (DPC) It’s been a busy start in 2022 for DPC’s state advocacy efforts. Many states are holding shorter legislative sessions due to the upcoming primary elections, and several bills impacting dialysis patients have been introduced and are moving quickly through the legislative process. Legislation to expand Medigap access has been introduced in Arizona, Kentucky, Louisiana, Maryland, Nebraska, New Jersey, Rhode Island, Vermont, and Wisconsin. Improving access [...]

Falling by the Wayside? Falls Prevention in Dialysis

2022-05-06T16:08:10-04:00April 25th, 2022|Categories: Dialysis, Fact Sheet, Physical Health, The Kidney Citizen|

By Laura Plantinga, PhD, Bernard Jaar, MD, MPH, and C. Barrett Bowling, MD, MSPH Why are dialysis patients at particular risk for falls? Studies show that approximately one-quarter of dialysis patients fall every year, meaning that they are about three times more likely to fall in any given year, compared to the general population. While older age certainly plays a role, there are several other factors that put dialysis patients — regardless of age — at higher risk for falls. In fact, most falls probably result from a combination of factors, usually a combination of long-term “predisposing” risk factors [...]

The Courage to Self-Cannulate – Taking Control Means Less Pain, More Independence

2022-05-06T15:41:22-04:00April 25th, 2022|Categories: Dialysis, Quality of Life, The Kidney Citizen|

By Michelle Carver, Vice President Clinical Service Initiatives at Fresenius Kidney Care If the idea of self-cannulating every time you dialyze seems impossible, you are not alone. Many people fear needles, especially the large ones used for dialysis. But trust me, when you learn to do it, you’ll wonder why you ever doubted yourself. It gives you control, may make your access site last longer and, believe it or not, hurt less. One of my dialysis patients compared it to putting a cotton-tipped swab in your ear – would you rather do it yourself or have someone else do [...]

To Change or Not to Change?

2022-05-06T15:16:44-04:00April 25th, 2022|Categories: Lifestyle, Mental Health, Nutrition, Physical Health, Staying Healthy, The Kidney Citizen|

By Dr. Stacy Ogbeide, Board Certified Clinical Health Psychologist www.stacyogbeide.com “Why is change so hard?” I hear this statement often from the patients I see in primary care. From taking a medication as prescribed to starting an exercise program – change is hard. Having a chronic health condition like Chronic Kidney Disease (CKD) can be difficult because, like many other chronic health conditions, CKD is heavily influenced by lifestyle and behavior modifications. What is a person to do? “I just need to do it.” “I will change when I want to change.” “I will start next week.” “I want [...]

Wellness and Mental Health While Living with Rare Disease

2022-05-09T13:15:48-04:00April 25th, 2022|Categories: Lifestyle, Mental Health, Physical Health, Stress Management, The Kidney Citizen, What Causes Kidney Disease|

  By Maya Doyle, MSW, PhD Cystinosis is a rare lysosomal storage disorder (1) that is typically diagnosed in childhood and typically results in kidney failure and progression to dialysis and/or kidney transplant. In the United States, a disease is considered rare if it is affects fewer than 200,000 Americans. According to the National Institutes of Health (NIH), there are approximately 7,000 rare diseases affecting between 25 and 30 million Americans – this means 1 in 10 people may be affected by a rare condition (2). The experience of a rare condition can be very isolating because of the [...]

My Experience as a Kidney Patient in CKD, Dialysis, and Transplant

2022-05-09T12:48:26-04:00April 25th, 2022|Categories: Diagnosis of Kidney Disease, Dialysis, Home Hemodialysis, In-Center Hemodialysis, Kidney Transplant, Stages of Kidney Disease, The Kidney Citizen|

By Orlando A. Torres After a 30-year battle with chronic kidney disease (CKD), in 2016 I had Stage Five kidney failure. This was the end of a three-decade battle which took countless hours of treatment. For years, I had been followed medically for CKD, having a special test done monthly and eating a special diet. As a CKD patient, my condition affected other organs in my body. The number of regular activities I could do also declined, but I never quit and refused to accept those limitations. I never let CKD limit what I did. I think it is [...]

Living with Chronic Illness and Bipolar: A Story of Resilience

2022-05-09T12:27:09-04:00April 25th, 2022|Categories: Mental Health, The Kidney Citizen|

By Ashley Abedini I opened my eyes to find myself lying on a hospital bed. This was not exactly a new experience for me; I have a chronic illness called Cystinosis, a metabolic disorder that has led to health issues, most notably kidney failure. As a result of this, I had to go on dialysis for about a year, leading to frequent hospital stays. I was diagnosed at just six months, so it is something that has been a pivotal part of my life. The hospital bed, cold blank walls, and countless nurses were a familiar sight. This hospitalization [...]

How to Move Out of Loneliness and Isolation

2022-05-09T17:01:49-04:00April 25th, 2022|Categories: Mental Health, Stress Management, The Kidney Citizen|

By Rebekah Palmer Oftentimes, people whose bodies live with rare diseases and chronic illness are not only separated from their peers and society, but feel separate from their peers and society. This is especially true regarding peers who are considered able-bodied, as well as a society that is inherently ableist. People who do not live with chronic illness do not always know the existence that is lived regularly with hospital and clinic visits, and the consumption of treatment and medications. It can be what we see and hear on media and online when it comes to how disabled and [...]

Depression and Dialysis – A Look at Two Potential Treatments

2022-05-10T11:36:41-04:00January 3rd, 2022|Categories: Dialysis, eNews, Medication, Mental Health, The Kidney Citizen|

It is not uncommon for patients receiving dialysis treatment to have depression, though it can be hard to distinguish the symptoms of depression from those of kidney failure. Trouble sleeping, poor appetite, headaches, and fatigue are all symptoms of both conditions, leaving dialysis patients to wonder not only if they have depression, but if treatment would help to improve the symptoms they are feeling. Talking to your kidney care team is a great first step to figuring out who you should talk to about whether you have depression, along with figuring out potential treatment options. Though there are many ways to [...]

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